10 Things I Took For Granted...

Below is a list of the top 10 things I took for granted before having Rheumatoid Arthritis:

1. Washing & styling my hair - Since my hands have become very painful and swollen, I have lost the ability to squeeze anything. I currently use herbal essences shampoo, however the design of the bottle is a nightmare for me to get anything out of it, particularly the conditioner! I have devised a new way of getting the shampoo out of the bottle, which is pressing it against the wall with one hand and putting my other hand underneath to catch the shampoo, but this does take a lot of effort. I think I may start choosing my shampoo based on the bottle rather than the contents! Once I have got the shampoo out, I really struggle to get my left arm higher than shoulder height, which means anything to do with my hair has to be done with one hand. It doesn't sound that bad, but try washing your hair with one hand, its not that easy! Especially when the fingers on the hand you're using are swollen. This also goes for putting my hair up, so if you see me going for the "bed head" look, this may not be out of choice, it is probably because I haven't been able to do anything with it!

2. Not having to worry where I can get a parking space - There are times when no matter how sore/tired/lazy/ill you are feeling, you have to go shopping, and this applies to everyone! There's always that one thing you consider leaving for another day, but in the end, you really need it that day and have to go out. On these days, I will drive round and round for ages to try and find a spot close to the shop that I need to go to. Even if I have been driving for 15 minutes and there is a perfectly good spot further away, sometimes I just cant manage the walk on top of having to walk around the shop.

 3.Wearing what ever shoes I want, when I want - I adore shoes! And in particular, I adore high heeled, platform shoes. However these do not mix with swollen and painful feet or weak ankles. Don't get me wrong, there are some days when I can wear heels, but more often than not, I can't. If I know I want to wear heels at the weekend, I do try to walk less during the week to try and keep the pain down, but this does not always work. Also, it's not just heels, sometimes I cant wear a pair of flat shoes simply because my feet are too swollen to fit in them.

4. Helping people - So many times I hear "will someone help me carry this" or "can someone pick one of these up" and previously I would be the first one to help. Even though I am small, I was surprisingly strong and would never think twice about helping someone with anything. But now I simply can't! I am in pain in so many places that I struggle doing things for myself let alone helping anyone else. My consultant also told me that putting too much pressure or strain on an affected joint could tear my tendons around it very easily. Even though I know this, I always feel guilty when I hear someone ask for help , especially when no one else volunteers and sometimes I will try anyway. 

5. Being able to pick up a cup of tea with one hand  - I first noticed the start of my arthritis when I felt pain in my knuckle picking up a cup of tea. Since then it has spread to my fingers and wrist, which makes it incredibly painful to pick up anything with one hand, even a cup of tea! I cant put any pressure on my index finger because it is so swollen or my middle finger because the knuckle is so painful, which means that the only fingers I can put in the handle part is my ring finger and little finger. If you've never tried picking up a cup of tea with just those fingers, it's really hard! My left wrist is also too weak to hold it, so I have to share the weight between both hands.


 6. Enjoying lying around in bed at the weekend - I used to love the feeling when you first wake up at the weekend, with no need to get up right away, so you can just lie in bed  under your nice warm covers and wake up gradually. Not anymore! Now when I wake up, I want to sit up right away because something, somewhere will be hurting, no matter what position I lie in.

7. Unlocking a door - It is a nightmare for me when I have to use a key to unlock or open a door! I find it really hard to grasp the key and then I also really struggle turning it. I feel like Alice in Wonderland trying to open a tiny door, using a tiny key, with a massive hand! I have to use a key every day to get in to work and quite often at weekends there will be no one home when I arrive. There have been times when I have spent 10 minutes outside my house trying to get the key into the lock or trying to remember which way I am meant to turn it, because neither seem to be right!



8. Being able to open up bottles, jars and packets - This is a bit of an obvious one, but when you have swollen fingers, it is almost impossible to open anything. I can't count the number of times I have gone to make pasta and not been able to open up the jar of pasta sauce, or gone to make a drink and can't open up the vimto bottle.  It is so frustrating when you are on your own.

9. Not having to arrange my life around medication - At the moment, I take 8 pills of methotrexate on a Wednesday morning. This means that my Wednesday evening is pretty much a write off because I feel horrendous. I have never known nausea like it and it can last for days. I try to arrange everything I have to do in the week so that Wednesday is clear. That way I can go home after work on Wednesday and spend the night watching films, reading or having an early night. I also have to take advantage of the times when I don't feel sick and try and eat something, because at the moment I can't make it through a meal without having to stop due to feeling sick. I can't actually remember the last time I ate a full meal.

 10. Feeling secure in public places - It has never been something to cross my mind until I got RA. But if I know I am going to a public place, I can't help but worry that I am going to get hurt. Places like pubs and clubs are the worst because people will just push past you without thinking that they could be doing some real damage to a person who is fragile. But I even worry in places like waiting rooms because I'm scared a child is going to bash my feet while I'm sat down. I didn't realise before, but public places can be very stressful places because you have no control over other people.


This may seem like a negative post, but I thought it was important to show what RA sufferers go through on a daily basis. I also thought it was important to highlight how much some people take for granted, I wish I realised before hand. They may seem like small issues, but it's hard to deal with when they occur on a daily basis and you never had this problem before.

My next "10 things" post however, will be a positive one , so look out for it!
    

MTX Week 4 & Pride of Britain

Hi everyone

So, once again its methotrexate Wednesday, meaning the 5am wake up call included 6 MTX pills today. I still haven't noticed any side effects, which is great and since this is my fourth dose I'm hoping to start to see some improvement soon.  

I have also now started on a new medication omeprazole, as my heart burn from the steroids was starting to get unbareable and making me throw up all the time. Rennies and Gaviscon were my first point of call, as I really didn't want to be taking another pill, but when they made no difference I backed down and rang my GP Dr Wilkinson. She really has been very supportive and brilliant with me, and she prescribed omeprazole straight away in a rush at 5.30pm on Friday so that I could start on it immediately. Even though I didn't want to add to my long list of pills, I have to admit that they started to work the very next day and I now am heart burn free!! It's just annoying that I am now having to take more medication to reduce the side effects of other medication!

I used to take extra strength cocodamol before bed to help me sleep through the night, but I decided to stop this over the weekend to see if I still needed it. Turns out that I am still sleeping as well without it, so no more cocodamol for me!

I have aslo decided to stop taking ibruprofen in the morning, as not only is it a prime culprit for causing heart burn, I don't want my body to become to reliant on such a cocktail of medication. Since stopping the ibruprofen I am in a bit more pain in the morning, particularly in my hands, and it takes me longer to loosen up throughout the day. But its not causing me enough pain to make me desperate to take pain killers. so for now I am staying off them!

What I also really wanted to talk about on my blog today was the Pride of Britain Awards that were televised last night, and in particular, one of the winners Alice Pyne. Alice is 16 and has terminal cancer. Rather than be defeated, she has decided to create a bucket list, with her number one aim "To get everyone eligible to join a bone marrow register". Her blog documents her life and progress with her bucket list. She knows that there is no getting rid of her illness, but she has decided to do everything she can to prevent others from getting in the same predicament. So far, she has inspired 40,000 people to sign up to the bone marrow register.

Alice Pyne - an amazing young lady

This really struck a chord with me last night, not only because she is so inspirational, or because she is from Ulverston, which is where I work and 20 minutes from my home town of Barrow, but also because she demonstrated exactly how powerful a blog can be in raising awareness.

The aim for my blog is to have a place for young people to turn when they are diagnosed with Rheumatoid Arthritis. I plan to document everything I go through in terms of medication, side effects, relationships, lifestyle changes and so on, so that other young sufferers have some idea of what to expect. 

When I was diagnosed, and still to this day, I struggle to find anything about young sufferers with RA. It is a scary time when you are only at the start of your life, and you suddenly lose control of how it is going to go from now on. I'm still at the start of my journey, so I'm in the dark about what is going to happen over the next year, I have no idea if I will get to a point where I can walk down stairs without pain, or if i will ever able to use my hands again properly. So hopefully, I can build up a fairly detailed diary of what happens next, and this will help others. 

Please help me spread awareness of this blog and pass it on to as many people as you can.

Thanks :)

A HUGE thank you!

I have been overwhelmed with the response to my first blog post regarding my battle with Rheumatoid Arthritis!

It was so lovely to have so much support from everyone, it makes such a great difference to know that you have people behind you when you might need them. When I decided to start this blog, I didn't realise how much it would affect the people I know, mainly because I also didn't realise how much I had kept my journey to myself.

I have become some what of a recluse over the past few months. Partly because going somewhere takes so much effort with not being able to drive and being in such pain walking and moving. But also because I didn't want to burden people. I'm usually a very upbeat person, so I didn't want people to see me down and struggling. This meant that a lot of people around me had no idea what I was going through.

But I have learnt that it helps to share, and this blog will most certainly help me do that!

It was also amazing to hear from other RA sufferers and share their experiences. It makes it a bit less daunting starting Methotrexate (MTX), knowing that there are people I can talk to about the dosage increases, injections, side effects, etc.

The response really took me aback, so thank you once again.

I hope you all continue to follow and enjoy my blog.